Get Involved!

Together, we can make a huge global impact and support each other in our journeys navigating PTLS, towards finding an effective treatment to help our children with Potocki Lupski Syndrome!

If you would like to contribute to any of the Fundraising or awareness ideas below please use the ‘Email Us Here!’ button below -if you have any other ideas for fundraising or awareness please let us know, we love BIG ideas around here 💚

Ava Pulley, 19 with her PTLS Hope Kelly green logo T-shirt - available in our merch store https://www.ptlshope.org/merch-shop-now

100% of the proceeds go to research initiatives

  • We can assist with setting up crowdfunding pages like JustGiving and GoFundMe.

    We can provide content and wording templates for fundraising campaigns.

    Fundarasing ideas, fun run in you local park, take on a fitness challenge and ask people to sponsor you to reach your goal amount, coffee & cake morning at home, ask local businesses to make donations for recognition on our social channels – think big!! We will help, Be the HOPE!

  • Share ideas for articles or personal stories related to your PTLS journey

    Write a page about your experiences as a caregiver or a day in the life of your child with PTLS.

    This can be a day in the life video or a written article (don’t worry we will edit the whole video for you!)

  • Share a quote you love about Hope or the importance of research and hope for the future.

    Provide a photo you love of you and your child to accompany the quote.

  • Share your story with us to feature on our website's family stories section. Link to fill in your story here - https://www.surveymonkey.com/r/FCLLVMD

  • Fill in this current research survey to contribute valuable insights to ongoing studies. Link to survey here - https://www.surveymonkey.com/r/ptlsresearch

  • Contact your local press to let them know about our organization and mission, share a personal story with them about your life navigating PTLS, we can help with this.

    Find out if your workplace will match donations to non-profit organizations.

    Explore our open roles for volunteer opportunities to contribute more of your time and skills. - https://www.ptlshope.org/join-our-team